Current situation – Voluntary assisted dying overseas

The Tasmanian Voluntary Assisted Dying Bill 2016 is based on a very thorough examination of legal assisted dying overseas which is provided for in legislation and through Court decisions. Also carefully examined have been the criticisms and perceived risks of those systems and the way those systems reflect cultural values and the medical, legal, political and social context in which they operate. The resulting Bill includes provisions to reduce perceived risks.

This section of our website includes:

Access to voluntary assisted dying is increasing, including a significant increase in voluntary assisted dying laws since 2013

Current situation – legal voluntary assisted dying

Differences between voluntary assisted dying laws including:
– All working safely regardless of the differences
– Broad models
– Differences reflect dominant cultural values and the medical, legal, political and social context

Common fallacies and misunderstanding about existing laws.

ACCESS TO LEGAL VOLUNTARY ASSISTED DYING IS INCREASING

By the end of 2016, over 100 million people live in places with some form of voluntary assisted dying legislation, excluding Switzerland and Germany.

The pattern that is now occurring is the same for all social law reform – early pioneers (eg Northern Territory, Oregon), followed by retaliation by opponents and setbacks (eg Euthanasia Laws Act 1997), slow progress despite multiple Bills and other initiatives (eg Court challenges), then major successes (eg February 2015 unanimous Canadian Supreme Court decision in Carter vs Canada and national as well as Quebec legislation). The tide turns and then flows in strongly.

The major lesson is that, like all fear-mongering campaigns, the one against voluntary assisted dying has worked very well but for a limited time. In the end, the campaign has become a case of ‘crying wolf’ too often when there’s no wolf there. Or, the repeated claims that ‘the sky’s falling in’ are shown to be nonsense. Repeated thorough reviews, such as the Canadian Supreme Court consideration and the Victorian inquiry into end of life choices, have found consistently there’s no ‘wolf’ and the sky’s not fallen in wherever assisted dying laws have been introduced. It is highly implausible to expect that it will do so in Tasmania where we are fortunate to have the standards of doctors, of palliative care and of law enforcement.

Significant increase in voluntary assisted dying laws since 2013

Since the last Tasmanian Voluntary Assisted Dying Bill was debated in 2013, the number of jurisdictions with voluntary assisted dying laws has increased significantly. Most recently, this has included:

Canada, with a population of approximately 36 million – and culturally the most similar jurisdiction to Australia – had its legislation passed in June 2016, with immediate effect.

California, the largest State in the US, with a population of over 37 million, passed its End of Life Option Act. It was signed into law in October 2015 by the Catholic Governor, Jerry Brown, who did not use his power of veto which he was lobbied intensively to do. It came into operation in June 2016.

Colorado(with a population of over 5.5 million)voted 65% in favour of its End of Life Options Act in the 8 November 2016 ballot. Read more hereon details of the ballot including official data on spending for and against the proposition. As in all such ballots and all the campaigns against voluntary assisted dying, the Catholic Church and associated individuals and organisations provided the vast bulk of the funding. In Colorado, this included over $2.2 million of the total $2.6 million spent in the campaign against the ballot initiative. (In a similar ballot in Massachusetts in 2012, the Catholic spending was the bulk of over $5 million spent against the Death with Dignity Act ballot. This was 4 times the spending on the pro-campaign. The ballot was voted against by a very narrow margin – 51 – 49%.)

By contrast, Oregon has a population of about 4 million, The Netherlands close to 17 million and Belgium just over 11 million. This needs to be considered when comparative numbers of assisted deaths are being cited.

CURRENT SITUATION – LEGAL VOLUNTARY ASSISTED DYING

Note: When followed by an asterisk (*), valuable independent information can be found in the report of the Victorian inquiry into end of life choices, particularly in Chapter 8. There are details in Appendix 3, ‘International jurisdictions summary’, of background, timelines, summary of eligibility and safeguards, reporting and oversight and deaths under the law, where available at the time of the report. More detailed information about specific provisions of the legislation can be found in Appendix 4 of the report, ‘Legislation in jurisdictions that allow assisted dying’.

There is some limited information on Canada but its legislation was not passed until after the Victorian report was released. This list also provides links to additional information.

Considerable action both legislative and legal is occurring in other US States. Latest news is available here.

DIFFERENCES BETWEEN LEGAL ASSISTED DYING LAWS

Although there are similarities between existing laws and proposals for legislation, there are also significant differences which are often not understood. DwDTas has prepared Comparison of safeguards with Tas VAD Bill – Jan2017which is a detailed comparison of key provisions of the Voluntary Assisted Dying Bill 2016 with similar details of overseas legislation and the Victorian recommended framework.

All working safely regardless of the differences

Like all other recent thorough reviews, the Victorian inquiry into end of life choices found that all regulatory frameworks for doctor-provided voluntary assisted dying are working safely, regardless of the differences.

The Committee is satisfied, through its research into international jurisdictions, that assisted dying is currently provided in robust, transparent, accountable frameworks. The reporting directly from such frameworks, and the academic literature analysing them, shows that the risks are guarded against, and that robust frameworks help to prevent abuse. (p212)

The data from these jurisdictions, the academic literature, and what the Committee learned by meeting with doctors and other experts shows that the concerns about abuse have not eventuated. The eligibility criteria and safeguards are restricting access to only those who qualify, and protecting vulnerable people. (p216)

Other key points included:

We found no evidence of institutional corrosion or the often cited ‘slippery slope’. (pxvii)

The Australian Christian Lobby, the Catholic Archdiocese of Melbourne, Doctors Opposed to Euthanasia, the Australian Catholic Bishops Conference, and the Australian Family Association, amongst others, suggested that safeguards in assisted dying frameworks cannot provide adequate protection for the vulnerable. … While their concerns about the safety of vulnerable people and the need for them to be protected are valid and should inform the design of any assisted dying framework, the Committee did not find evidence to support these concerns.(p213)

Broad models

There are two broad approaches to voluntary assisted dying legislation. (The approach taken in Switzerland and Germany without specific legislation is not being proposed in Australia and would be generally regarded as inappropriate.)

US States – The Oregon Death with Dignity Act 1994 was the first and is the most long-standing legislation. The dominant value of all the US voluntary assisted dying legislation, and court decisions, is individual autonomy and self-responsibility.

European and Canadian models where individual autonomy is important but the major focus of the legislation is on ending intolerable or unbearable suffering. The major difference between the European and Canadian legislative models is the requirement in the Canadian legislation that, in addition to serious incurable illness and great suffering which cannot be relieved, the person must also receive a prognosis that their death is reasonably foreseeable.

Differences reflect dominant cultural values and the medical, legal, political and social context

The differences between assisted dying legal approaches reflect the significantly different cultures and history of law reform, priorities given to particular principles and values in the different jurisdictions, and the medical, legal, political and social context.

The Victorian inquiry made a very important point that is often overlooked when considering voluntary assisted dying legislation – that is, the importance of establishing a framework that suits the culture and values where the law is being introduced and which is practical and workable within the medical and legal systems.This means that it’s not possible to adopt legislation from elsewhere ‘as-is’. It is also very unwise to cherry-pick bits of other laws without careful consideration of why those provisions have been included and what impact they have had. Everything needs to be carefully assessed to ensure consistency with our core values and principles, practicality and suitability in our medical and social context and whether it will meet specific priorities and aims of the proposed voluntary assisted dying law.

As the Victorian report says:

Although there are many differences between the frameworks, the Committee saw benefits in aspects of each. (p14)

These jurisdictions [with legal assisted dying] highlight the importance of establishing a framework that suits a particular jurisdiction’s medical and legal culture and of providing the appropriate safeguards within that framework” (p205)

… an assisted dying framework must reflect the values and culture unique to a particular jurisdiction. Certain elements of each framework are effective precisely because they reflect this uniqueness” (p217).

The Committee recommended what it considered “an appropriate cultural fit in the context of Victoria’s medical and legal systems and culture“. (p14)

COMMON FALLACIES AND MISUNDERSTANDING ABOUT EXISTING LEGISLATION

There are some common, repeated fallacies and misunderstanding about overseas assisted dying legislation that have fuelled irrational fears about the risks and inaccurate claims about abuses. They have also unreasonably influenced perspectives on what is suitable legislation within Australia.

For jurisdictions with legislation (ie does not include Switzerland, Germany or where court decisions have determined the legality), the common fallacies and misunderstanding include:

1. “Terminal illness” is not and has never been a requirement in The Netherlands, Belgium or Luxembourg.

It is factually incorrect to claim that the requirement used to be terminal illness and isn’t any longer, or that people who are not ‘terminally ill’ have received assisted dying illegally. These fallacies are often claimed as ‘evidence’ of the ‘slippery slope’ or category ‘creep’.

2. It is only in Oregon and other US States that people are required to be “terminally ill” and there is a timeframe prognosis to death.

The 6 month prognosis to death which is required in Oregon and other US States is there because of the US medical system. This prognosis requirement is there because, as reported by the Victorian inquiry: “doctors in Oregon told the Committee that the requirement that a patient be within six months of death to access assisted dying is based not on a medical judgement, but on the fact that federal funding for hospice care is available to Oregonians at that point” (page 223). This “is not applicable to the Australian context which provides universal health care”. (page 224) Federally funded palliative care (called ‘hospice care’ in the US) becomes available when doctors provide that prognosis. There is no requirement in Oregon or any other US State for the people requesting assisted dying help to demonstrate that they are suffering or that the suffering is intolerable/unbearable or unrelievable.

The long-term data from Oregon shows how unreliable the prognoses can be (even when US doctors are experienced in providing them). The latest annual report shows that the duration between first request and death has been as long as 1,009 days (over 2 and a half years). This is understandable because prognoses of this kind are acknowledged by doctors to be difficult and unreliable and it is often undesirable for them to be provided to the patient because of this unreliability.

People for whom a prognosis of 6 months to live is very difficult or impossible to make are not eligible for assisted dying as they would be in the European countries or possibly in Canada. This is regardless of how bad their suffering is due to advanced serious, incurable and irreversible conditions with no chance of recovery. (For example, the people whose stories are included in our Real Stories section: Joan Fitz-Nead(suffering resulting from spinal disintegration), Elizabeth Godfrey (suffering from spinal damage) and Loredana Mulhall (suffering from MS).

3. In Canada, as official advice shows, it is not necessary for someone “to have a fatal or terminal condition to be eligible for medical assistance in dying“.

The Supreme Court judgement excluded any ‘terminally ill’ requirement including a timeframe prognosis. However, the Government added the requirement that: “their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining” (S241.2(2)(d)). The Canadian Senate initially voted for an amendment to exclude this requirement because it could limit access to medical aid in dying by people with great suffering and there were some speeches with very strong arguments against it (eg Senator Chantal Petitclerc, a former paralympian). The Senate later agreed with the House of Commons to include it.

The requirement has been criticised and is likely to be challenged in the courts because it it is an additional requirement that was not in the Supreme Court decision or in the recommendations of the Joint Select Committee of the Canadian Parliament. (See Key reports and resources page for links.) It is also not in the Canadian Medical Association principles-based recommendations.

There has been criticism about the vagueness and lack of clarity of the provision and that it is causing significant problems, with doctors anxious about the uncertainty it creates for them, and the potential for complaints against them and/or perceived breaches of the Act because of different judgements about something as vague as “foreseeable death”.

The Quebec legislation has been criticised because it requires the person to be “at the end of life” and this is causing problems because it is not defined in the law, is vague and is preventing people from accessing assisted dying even though they are at the end of their lives and with great suffering. During the debate on the Canadian Bill, there was a report of someone in Quebec starving themselves for a considerable period so they would come within the definition of “at the end of life”. This newspaper article reports on this situation.

4. In assisted dying laws everywhere except in the US, the focus is on ending unbearable and unrelievable suffering. Increases in numbers of assisted deaths represent an increase in the number of people with unbearable suffering who have received their doctors’ assistance.

For example, in The Netherlands: The physician must be satisfied that the patient’s suffering is unbearable, with no prospect of improvement. This is explained in detail in the annual reports including the latest available in English for 2013, pages 10 and 11.

Unbearable suffering may be due to a wide range of serious and often complex medical conditions, the most common of which is cancer ( 70- 80% of assisted deaths involve someone with cancer). For example, in all the annual reports in The Netherlands, there are case studies of assisted deaths with greater detail on the nature and extent of the unbearable suffering due to the devastating effects of their serious, incurable and often complex medical conditions.

The most common medical condition related to assisted deaths are:

Cancer – Oregon –77.4% overall (ie of all assisted deaths since 1997) and 78.9% of the 133 assisted deaths in 2016; Netherlands (2013) – suffering due to cancer was related to 74% of 4,829 assisted deaths

There is no mention of mental disorders in the Oregon data. In the Netherlands 2013 data, mental disorders was associated with 0.8% of the total 4,829 assisted deaths. The Netherlands also has a separate category not reported on anywhere else – “multiple geriatric syndromes”. In 2013, suffering due to these syndromes was involved in 5% of assisted deaths.

5. Despite the increases in numbers, assisted deaths remain a small proportion of total deaths in the jurisdictions that have assisted dying laws

This includes in 2015, 3.75% in the Netherlands in 2015 and 1.83% in Belgium (Source: Interim Update in Canada) and 0.37% in Oregon (2016 Report).

6. One of the common fallacies is that feeling a ‘burden’ is a major reason for voluntary assisted deaths but this is based solely on Oregon data and on an inaccurate interpretation of that data.

Reliance solely on Oregon data gives a very distorted picture of assisted deaths

Assisted deaths in Oregon are a tiny proportion of total assisted deaths. Oregon’s population is only 4 million, compared to 17 million in The Netherlands and approximately 11 million in Belgium. Assisted deaths are a smaller proportion of total deaths in Oregon because of the limitations in both the Oregon law and difficulties in access to suitable and affordable drugs.

Inaccurate interpretation of the Oregon data gives a false picture

In Oregon and other US States, there is no data collected directly from the people who receive a prescription for lethal drugs. They are not surveyed about their view of their suffering or any other reasons for taking the drugs.

The data reported in the annual reports is collected from doctors who complete a form after a person has died using drugs prescribed by those doctors. The data represents doctors’ notes and interpretation of what patients mentioned at the time of requesting, and being given, a prescription for lethal drugs, and the doctors’ decisions on which of the narrow categories on the form, if any, best represents the patients’ comments.

No data is collected from doctors or from the people at the time people take the drugs. There is no data about the people’s suffering or any other reasons for taking the drugs and whether concerns they raised when seeking a prescription still applied. Nor is any data collected from the third of people who get a prescription but don’t take it.

This is the form completed by the Attending Physician and provides the data for the Annual Reports. The form has limited categories and the doctors may tick all the boxes or none. It is the misinterpretation of Question 15 on page 3 which has led to the fallacy that feeling “a burden” is a major reason for requests for assisted dying. Physicians are asked whether the patients have expressed “a concern about … the physical or emotional burden on family, friends, or caregivers” not if patients expressed a view that they “feel a burden”.

7. It is only in Oregon and other US States that the lethal drugs must be self-administered by oral ingestion and without the doctor being present.

As the report of the Victorian inquiry into end of life choices says: “a patient in Oregon can receive a prescription for a lethal drug and choose not to see their doctor again. This is because choosing the level of interaction with a doctor reflects the value of self‑determination that is fundamental in American culture” (page 217)

People who cannot self-administer are ineligible even when they meet other requirements. This means that someone like Loredana Mulhall would be ineligible because of her physical incapacity due to MS.

8. Suitable drugs are not readily available or affordable in Oregon and other US States and there are unsatisfactory complications as a result.

There are very unsatisfactory complications with oral ingestion with the affordable drugs (eg regurgitations) and without medical support available if they do occur because doctors do not have to be present. However, the data is limited and concerning. As the latest annual report shows, data on complications is only collected when a “health-care provider” is present. Yet, since the law came into effect there have been 30 people (of a total 1,127 – 2.6%) who had difficulty ingesting the drugs or regurgitated them. An additional 6 people regained consciousness after ingesting prescribed lethal medications. In 2016 alone, there were 3 people who had difficulty ingesting the drugs or regurgitated them out of the 28 cases where a medical provider was present.

This article from an oncology nurse publication reports on an article in the Journal of the American Medical Association (JAMA) Oncology which identifies the difficulties and the recent exorbitant cost increases in available drugs. (Abstract of the JAMA article)

The less satisfactory drugs used involve up to 100 capsules or a cocktail of drugs prepared by individual pharmacists. This causes major problems for the people concerned and their families or others who help them. This article reports one experience under the recently passed Colorado law where it took an hour and a half to break and empty the 100 gel capsules.

Because of the hyper-sensitive political environment in the US, legislative changes have not been attempted to remedy this problem.